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Understanding PEG document draft posted

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hello,

Thanks for all the lively comment and feedback last week on an early version of the PEG docment. I have reframed the entire view of the content and the new name is Understanding PEG for HNC patients

I did my best to integrated the comments yet make the document still have some flow and logical grouping of subject topics. Please feel free to use a Word version or the PDF while reviewing the document. My goal is to accept comments for the next few days then have that version become version 1.

Thanks for all your help placing this rather charged topic on the table in good light to maximuze the chance the topic can be discussed in an open and useful manner.

Word 97-2003
Word 7
PDF

 

Thanks don

Ladylacy
Posts: 457
Joined: Apr 2012

While I think you are sincere in what you are trying to do, I still don't believe this should be done.  This is a decision between the patient and the medical experts.  While you point out your type of radiation and problems, in head and neck cancer there are too many different types and how to treat it.

While many people who have PEG tubes do great with no problems, there are some, like anything that is done to the body, that have problems with a PEG tube.  While some can do without a PEG tube, many more need them.  So much easier to put in before treatment starts than afterwards and if not needed so easy to remove.  One thing when you talk about the need for one, you leave out that radiation can completely close off the back of your throat and the throat has to be reconstructed, while probably does happen to many, it did to my husband,  and therefore a PEG tube cannot be inserted thru the mouth and down the esophagus.  Swallowing problems can occurred regardless of whether your have a PEG tube or not.

Thank you for all of your hard work, but I still disagree.

Sharon

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hi all,

If you have a chance and want to contribute your perspective and knowledge to this collection of topics related to PEG, please try to pass back any comments by end of the weekend as I will be getting any remaining changes in and calling this version 1. Thanks for your help.

 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

The last sentence of this paragraph is grossly incorrect.  I  ran it by my RadOnc to make sure I was not misinformed and he told me that it is absolutely not factual.  He said the reduction in the size and or scope of the tumor(s) and infected tissue would get the same Radiation treatment irregardless of Induction therapy. 

"Induction TPF chemo therapy done followed by concurrent chemoradiation therapy. Induction TPF is very effective at shrinking and dissolving existing tumors, primary and regional nodes, and kill small microscopic cancer cells that migrated from the main tumor areas. With reduced tumors, the radiation map can cover less area and use less radiation with more precise mapping, and fewer side effects."

Don, you are a really smart guy with great intentions, but what do you see this document accomplishing?  From my perspective, there is no way that this, or any other document is going to benefit a scared, overwhelmed and confused person at the beginning of cancer treatment.  Now, if it simply an exercise for you to do while you are recovering, then I get it.  Otherwise, it just may do more harm then good.

Joe

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

This is very much an individual decision, between a doctor and the patient.  There are simply too many variables for this to be a meaningful analysis. It might even be a misleading analysis.

For instance, your brief paragraph on the potential issues associated with waiting to long to have the PEG installed is cursory. I personally know of a number of individuals who had issue with waiting too long. Rick's throat was so inflamed that they were not able to intubate him or insert the PEG, and he had to finish out his treatment on TPN. I was able to use my late-inserted PEG almost immediately, but most folks have to wait a couple of days before using it.  In hindsite, it is clear to me that late installation of the PEG cannot always be successfully accomplished.

The overall tone of your article is very scholarly, and it is very well written. The down side of that fact is that one might interpret this document as having been derived from a much larger data set than it was, or as having been derived with the input of a greater number of medical professionals.

Deb

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Thank you for your time to reply. I do really appreciate your thoughts as it offers me a chance to reflect on what I held as a core belief around some of this stuff. That is medical in nature as I have never been sick day in my life until BOT cancer came along.

Clearly, there are many facets to this issue and it goes without saying the topic is a controversial topic, even amongst professionals working in this field day in and day out. You can take a dozen doctors and you will find them each with their own opinions about PEG, even as simple as some having more less a predetermined position on them - get one early or wait until yuou need one. Nothing personalized about such a recommendation yet here are professionals who take such positions each and every day.

It goes without saying anything and all I wrote and understand about the subject has as much medical science behind it as ant poop. LOL I am certain I never convyed I was authoritative on this subject, nor had any medical background and that is fact. Again, given the authorative ones can argue PEG all day long, there is nothing that can be authored definatively by anyone here about PEG.

Maybe that is where I made a miscalcualation when what I felt a bit of ambition and good might make a topic a bit clearer than before. Maybe move to a point of clarity just a bit more in focus, maybe bring out the topics of controversy in a bit more rational and objective manner, maybe stating or framing the arguement at least. On this point I concede the goal was far too ambitious and maybe a testament to why PEG is and maybe always will remain such an emotional subject.

It appears that moving this forward even an inch is not likely to happen unless someone undertakes a serious effort and a serious amount of time and energy to try to do so. If one looks beyond and way down the road, one can catch a glimpse into why medical science moves so slowly. Why does it take so many phase 1,2, 3 trails etc. to even get a simple procedure or new therapy past the point of so much skeptcism that only some extraordinary amount of capital and sheer will can move the ball. I gues it is the nature of the medical field, much like why is medicine the only industry lagging decades behind every other industry in adopting modern IT best practices, technologies, and solutions. There is no sane reason.

If John wants to retain a copy of the last document or aonyone else, please grab a copy at your convenience. I'll keep them on dropbox for another month or afterwhich it will get cleared out during the following purge.

Thanks again for your time.

 

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

I could tell that you put allot of thought and effort into this and I liked that it was written in layman terms. The read I got was that some people need one and some won't, doctors vary in opinion, some get them early in tx, some later and some never. It's a decision a person will make with their medical team. I didn't feel like you were imposing your personal opinion or feelings on the subject and came across as objective.   

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

hwt,

Thanks for your comments. We all agree that every single topic related to our diagnosis and treatment of cancer is a consideration of each person's unique history and current condition as well as the unique characteristics of their own cancer and many other factors. Each decision is made by the patient with input and recommendations and opinion from their medical experts.

PEG is no different. It is a topic that requires gaining some education and knowledge about, what the trade offs are, what the bit hot pros and cons are, etc. Like all other decisions it is made by the patient. All I tried to do was present something that a newbie could pick up and in a few minutes get a decent idea of what it is all about, what sort of questions to ask and what other details they should have to make an informed decision.

For some reason, there are those who, rather than work collaboratively toward producing a better document would rather raise a questionable point in a manner that has no benefit to improvin the product, rather just point out someone is WRONG.  That is their opionion as is all of this. I reread that point and believe I state it mostly as I understood it from my MO and the RO. It would be great to raise it in a manner that a number of members of the forum could seek out their own version of this issue and collectively we write what the most common intpretation should be. Why attack someone, it makes no sense, it does not move things forward, it does not show good will, it only shows pent up bias and some sort of unwillingness to see the benefits of an educational brochure about PEG.

There are always going to be folks who support an effort, a few who are going to be nay sayers, and a very few who actually move from being a bystander to becoming an active participant in something that strikes a chord. That is what has baffled me about this whole PEG handbook or whatever, it can not even get past semantics before getting the boat full of holes. Clearly there is more than sufficient numbers and passion on the topic yet when it comes to actually roll ones sleeves up and do something, become activated, become involved, move from talk to do, the reality is the numbers dwindle.

Is there not a few of the hundreds who read this forum who feel the urge to stand up and get involved and become part of something that can be of benefit to others? Often times it is baffling and frustrating to gain traction early on. What surprises me is so few are able to become part of the solution rather than soap box their own position. At least I can say I made a concerted and earnest effort which is more than most. Thanks again.

katenorwood
Posts: 1802
Joined: May 2012

I think that most people going through tx's follow their doctors advice to the tee, not that they don't want knowledge.....but once faced with the cancer terminology they are scared beyond words.  I like what you said about advances moving slowly....maybe because we as survivors aren't out there asking the hard hitting questions.  PEGS save lives, and also contribute to quality of life for many.  This is but one faucett of the C-world we live in.  I was scared beyond words when faced with a rare form of cancer...no clinic had written documentation on for tx's or what this cancer really was, including our ACS.  Oh they knew the right words to scare the hell out of me....but no updated information.  I am impressed with your efforts, and commend you for trying as I said before thinking out of the box.  You are on the right track with trying to get information out there.  Maybe...as advancements are being made with geno-typing and personalized medicine.....we will still see a cure in our lifetimes.  But for now, our site has given many the knowledge to get through the tough tx's with dignity and the knowledge they're not alone in the fight.  Thank you Don for caring and wanting to make a difference !  Katie

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Katie,

You are a sweetheart and I do need to consider that this forum is convened to support those who are facing true life and death illness. So, understandably, it is filled with minds and emitions and fears and other deep emotional feelings that impact every word that is spoken and consumed here. Many are deatly frightened by going through cancer treatments and the unknowing of it all. There is no guarantee, no one who can say it is gone, never to return, or even that some side effects from the treatment like your teeth falling out and your jawbone disintegrating won't occur. It can be a truly frightening world to live in each day as cancer patients and survivors.

Every day we read about recurrence and failing treatments. Who would not be unhinged by reading this every day, knowing you could easily be the next one. That said, it baffles me who can possibly argue that education and knowledge of a relevant cancer topic can only provide net benefit to their own battle to learn and fight the disease they now have.

How can being less informed and knowledgeable and informed be a good thing? Katie, coming back to your point, there may be many here who are deatly frightened and just open their eyes just enough to see what they are facing next. Different people handle stressful situations in different manners. Some get very aggressive and proactive and want to pilot or at least co-pilot the battleship they are on as it navigates the treacorous seas of cancer treatment and recovery. Others prefer to just find a corner where they can grab a blanket and ride out the battle and pray and hope for the best. This I understand, yet in the range of responses I still do not see where having less knowledge and education offer more benefit to anyone facing cancer diagnosis and treatment. 

Lastly, nobody here can force or encourage anyone to read or digest any information that may be there for their consumtion. The supertread FAQ is a great example of how making education and knowledge available is a good thing for most. If you rather not seek more details do not read them. If you feel better reading and learning, then read them. Why not let the reader decide what and if to read and what to accept, reject, or otherwise question further the meaning and potential impact to their own situation.

Thank you Katie for your thoughtful comments. I learn every day.

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

Since you have done research on this, maybe you can put a question to rest for me. I had a g-tube following my surgery and they left it in through rads/chemo just in case I needed it. I read about issues people have had with the PEG and while feedback is that PEGs and G-tubes are the same, I either got lucky with no issues or they are different. I have always believed them to be different. Mine was about a 1/4" tube located on my left side of chest just below the breast. It was held in with a stitch. There was maybe a foot of tubing that was taped to my stomach when not in use. I could only use a gravity drip with it for Ensure or like brands, water, and pills crushed/mixed with water or liquid meds. No food ever went in the tube. Even if I wanted to try, it would have been too small. I had one issue with pain and the stitch was clipped and I had immediate relief. There was never anything hard or placed under the skin, there was never anything to clog, cleaning was simply running water through the disposable bag after the Ensure.  I was told not to shower while I had it but I also had a huge leg wound from removing the fibula that prevented showering. My point is: since the PEG seems to present so many issues, is the g-tube an easier and simplier alternative for people to ask about that only need help getting through tx itself?  

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

I hear these terms used interchangably and the most I could tell is there is a difference in the way the tube is inserted but function basically the same. You raise a good point which is why si the nasal version of feeding tube hardly discussed. My understanding is it is easily inserted and would still offer way to get liquid food into the stomach. That would be a nice thing to research and add as a another point of learning - various feeding tubes and pros/cons.  Thanks

 

Feeding tubes
Gastrostomy Tube Gastric feeding tube(G-Tube)
Nasogastric NG-tube
Nasojejunal NJ-tube
gastrojejunostomy or GJ feeding tube
jejunostomy feeding tube (J-tube)

PEG Percutaneous endoscopic gastrostomy

Percutaneous endoscopic gastrostomy versus nasogastric tube feeding for adults with swallowing disturbances. http://www.ncbi.nlm.nih.gov/pubmed/22419328

https://en.wikipedia.org/wiki/Feeding_tube

Viilik70's picture
Viilik70
Posts: 54
Joined: May 2012

I've had quite a few PEG tubes in and out, but my opinion is they are worth it while recovering you will get all the nutrition you will need and actually help you recover quicker than if you can't swallow all the nutrition you need the conventional way. They are not a big deal to take out when you are done. Basically if you have the balloon type you suck out the saline and pull out the tube and from time to time they do this by themselves and you have to have a new one inserted which again is not a big deal. They are not fun I admit but a necessary evil sometimes. I would worry more about the side effects from treatment and what side effects you can live with the rest of your life because your doctor is not the one living with them we are. They are selling you a service and when I do think they try to steer you right way, just make sure you get the big picture so you can plan for your future.

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hi,

I believe nobody is arguing that PEG is not "worth" it, more we just want to allow people to make an informed decision. What are the tradeoffs and is it really needed in your case and if so at what stage is that decision made.  You are quite experienced so I would encourage your participation here as you can share your actual experiences with others.

And your last point about the patient understanding the big picture and understanding and controlling their future is so right on. That is what this whole issue is about - just providing objective inforation and topics of debate so each patient can review and ask questions of their providers to fully understand what sort of decision they will make on this aspect of treatment. 

And when the medical field is so split themselves on the topic of PEG, then there is no way one should go in with any preconceived decision in their own case and maybe some education and discussion will proivde a better more custom solution for each patient in their own situation. The more I work on this the more rediculos the notion of GET-DON'T GET PEG becomes.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Hi donfoo

I live on the PEG tube and will for the rest of my life. I lost the ability to swallow food about a year and a half ago and it has been a lifesaver to me. I also found that I can eat anything I want through it just need the right blender. I am now using the Nutribullet and it has made a big different in my life. With other blenders they are so big I was confined to staying home, but with the Nutribullet it is so small I can carry it with me anywhere. I am a vegetarian but still eat fish now and then when on the road, all I do is to pop a fish sandwich in my blender with a little water and instant PEG tube food.

 

I still work full time for a Diving company and still have my online ministry that I do. I travel a lot and I am now able to travel outside of the US when requested. Life after Cancer and Cancer side effects is now starting to get back to a new normal. PEG tubes have their problems like anything in life, you just have to look at the good they do and keep moving forward.

Take care and God bless

Tim Hondo

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hi Tim,

Thanks for sharing your story about being creative in finding ways to PEG on the go, so to speak. Having that little blender allows you to have a lot more flexibility while out and about. Not sure how firing that up in a restaurant works but I know when I used a baby good grinder, nobody gave two winks.

Also, nice to hear words of encouragement that life goes on after Cancer and we all find our unique ways to adapt.

If I may ask Tim, what is the background on how you came to have the PEG and having the swallow issues? We hear all the time about one concern about PEG is on the ability to continue swallowing properly. Maybe sharing your story would shed some light on us. Thanks Don

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